The hospital waiting room

We caught each others eye. “Hello, are you his carer?” she asked as both of our husbands were led away for scans. “No, I’m his wife”. She chuckled at my response, but we both knew what she really meant. That when you live with ill health up close and personal, the boundaries between you as an individual, and your partner, start to blur. You become to each other so much more than a companion. In sickness and in health, your perspectives and outlooks change forever, whilst you try not to take anything for granted, and live your lives to the full. You become a lifeline, an anchor, whilst they keep you grounded, and in their struggle remind you that when it comes to the crunch it’s only the person that matters. The rest is superfluous.

Her husband has liver cancer, and they suspect that it’s spread. Mine has NF2 – Neurofibromatosis type two. A rare genetic condition which causes tumours to grow along the nerves. In hubby’s own words, living with it is “like fighting a constant war rather than a battle”. It won’t ever go away. There is no cure, surgery is often invasive and if nerve tissue is removed can result in paralysis of different parts of the body. When his cochlear tumours were removed, he lost his hearing, and the use of parts of his tongue and face. Since then, tumours have caused loss of feeling and use in parts of his limbs.

For a while he lived with a feeding tube, until he started asking for beer to be poured into it, and eventually got so frustrated that he pulled it out and forced himself to learn how to swallow again, despite the damage to his throat. Many a time I’ve had to prepare myself to perform the Heimlich manoeuvre over dinner, and I no longer cook anything that might be awkward to swallow.

In the last few years doctors have devised a way to perform MRI scans on patients with an ABI brain stem implant, without the magnet flipping over inside the skull. They wrapped hubby’s head, gave him a local anaesthetic, and asked for his permission to participate in a research study on the effects of MRI’s on ABI patients; by which point the man with liver cancer and his wife were already leaving. “Good Luck’ she whispered as they waved bye bye. What else can you say after all? When faced with life changing scenarios, anything else seems trite.

In the hospital waiting room, you leave your ego at the door, and bare a little of your soul. There’s no room for pride. Dignity yes. But as you watch gravely ill patients being wheeled past, and hear other people’s stories, you can’t hide from the fact that no matter who you think you are, or how much of an impact you’ve had, we are all skin and bones, and shitty things happen. You start wondering how your life will change once you’ve left this room. Will the news be good or bad? How will you manage? Even if the news is good, how can you pretend that you’re still the same person who didn’t used to ask so many questions? How can you make a difference? Is there any point in worrying? Why him? Does watching the person you love most in the world suffer, ever get any easier?

No it doesn’t, but we’re usually so much stronger than we realise, and we have an innate ability to adapt. I think it was Giles Duley, a man I truly admire, who said that it takes about a year to get used to something that changes your life completely – in his case it was losing three limbs. And he’s right. Yes you have to allow yourself time to grieve for what was, you may become depressed, you may not be able to see the light at the end of the tunnel, but with support you can come out on the other side, and be the warrior that you never knew you were.

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